City firefighters celebrate MDA fundraising record with child affected by muscular dystrophy

The hard work of firefighters collecting and Greater Fall River residents donating during the "fill the boot" fundraising effort to fight for muscular dystrophy led to the highest total raised this year for the Muscular Dystrophy Association by any fire department in the state, and likely all of New England, city leaders s...

The hard work of firefighters collecting and Greater Fall River residents donating during the "fill the boot" fundraising effort to fight for muscular dystrophy led to the highest total raised this year for the Muscular Dystrophy Association by any fire department in the state, and likely all of New England, city leaders said.

But the record achievement took a backseat to 8-year-old Jadin Cookson on Friday afternoon at the Flint fire station.

When firefighters hoisted the son of Paula and Wayne Cookson from his wheelchair into the seat of Engine 9, he started the motor and blasted the siren. Jadin, a quiet lad with light brown hair and dark brown eyes, managed a smile. That was what city firefighters and MDA team leaders Jay Burns and Jeff Bacon found most rewarding after raising $42,677 to fight the disease.

“We didn’t beat Boston and Taunton. It was the Fall River-area residents,” said Bacon, a captain on the department, of the perennial top-two fundraising teams.

“All our work doesn’t matter if the people don’t reach in their pockets,” added Burns, vice president of the city firefighters union.

“Wow, good for them! I knew Fall River was climbing,” Taunton firefighter and MDA drive leader Paul Allison said.

Allison’s led Taunton’s boot drive and multiple fundraisers the past 14 years on a department that’s been part of the MDA program since the late 1950s. Typically, the smaller department raises $30,000 to $35,000. This year, Taunton raised about $31,000 Allison said.

Allison said he “had no doubt” Fall River’s total was the highest in New England if it topped the list in Massachusetts.

The Fall River firefighters said they had the MDA’s permission to say they raised the most in the state.

In 2011, in its second year, Fall River finished third in the state and just $500 behind Taunton.

“We’ll take down Taunton this year, and we’ll come after Boston next year,” Burns said in August when firefighters across the country joined the effort as part of the MDA’s Labor Day telethon to help fight more than 40 neuro-muscular degenerative diseases associated with muscular dystrophy.

The most well-known is amyotrophic lateral sclerosis, often called Lou Gehrig’s Disease.

The MDA told Fall River and Taunton that this year Boston’s fundraising was well off the $60,000 to $65,000 that Boston, the largest department in the state, typically raises. The lower-than-usual Boston total set the stage for Fall River's achievement.

“This is just wild,” Burns said of motorists’ donations this year — which amounted to about $8,500 more than a year ago.

While Burns and Bacon later spoke at length, and with great pride, about their co-workers’ ambition and the generosity of residents, the presence at the fire station of Jadin — a second-grader at the Atlantis Charter School, —and his appreciative mother, Paula, was important.

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“I wish I could pick him up that easy,” Paula Cookson said as Bacon hoisted her 85-pound son onto another of the fire apparatuses.

The boy got to experience the rescue vehicle, ladder truck and a couple of engines. At one point he asked: “What does it sound like when it starts?”

Jadin quickly found out, with several firefighters joining in and encouraging him around the garage bays and inside the station when he held one of the tall rubber boots that filled up on summer days at city intersections.

Bacon told him the boot got heavy when filled with hundreds of dollars in coins and bills.

“We really haven’t had much contact with local families” affected by muscular dystrophy, Burns said. “We want to do more of ‘adopting” a family.”

This was a first time in the public eye for the Cookson family, which was contacted by the MDA.

The Paula Cookson explained that Jadin has Duchenne muscular dystrophy.

It was in kindergarten three years ago when the Cooksons noticed Jadin suddenly began climbing stairs a half-step at a time, bringing his right to join his left leg, rather than going up to the next step, she said.

DMD, characterized by progressive muscle degeneration and weakness, is one of nine types of muscular dystrophy, according to the MDA site.

While Jadin, who this year needed to start using a wheelchair, was kicking his feet in front of him, his mother explained it’s the trunk of his body that’s weakened, preventing him from standing up to walk on his own.

He has two older brothers, Justin, 21, and Taylor, 16, and one younger brother, Preston, 2. “They’re all healthy,” said the former Paula Cookson, city native who lives in a single-family house in the South End with her husband and four sons.

When Jadin was diagnosed, it came as a shock, Paula Cookson said. She said it was a disease he was born with. The genetic disorder mostly affects boys, and symptoms usually become apparent between the ages of 3 to 5.

Clearly, their lives have changed dramatically, particularly Jadin’s.

His mother talked a little about how the prednisone Jadin takes helps relieve his aches and pains but adds weight. She said the MDA helped the family with a stair lift in the house for Jadin. They need a second one, and a motorized, specially equipped wheelchair they expect to buy next month will cost $27,000, she said.

When one firefighter after another came over to shake his hand and pat him on the back and share a story, Jadin politely thanked them, not saying too much. They asked him to come back with his brothers — giving him four plastic firefighter hats before realizing two brothers were much older. They had a good laugh.

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“The most rewarding experience is actually meeting with people and seeing where the help is going, and hanging out with Jadin,” Bacon said.

“He’s a good egg,” his mom said smiling.

He’s popular at school, his mother said, with classmates asking about him when he’s been out. His older brothers also attended Atlantis.

When Bacon and Burns told her the nearly $43,000 this year coupled with $34,258 last year and $28,600 in their first year put the department over $100,000, and those funds would stay in the region to help affected families, Paula Cookson knew what that meant.

“I want to thank you for that. It’s a big, big help,” she told them.

The Warwick, R.I., MDA office helps an area spanning from Providence, to Fall River and New Bedford, to Taunton, the firefighters said.

Bacon and Burns didn't shy away from talking about how the road races, golf tournaments and other special events Taunton has done over the years have been a model for them in their fundraising outside the boot drive. Fall River did a few special events that helped raise the total.

“Once you meet the kids and families, they’re so appreciative. It’s hard not to get involved,” Taunton’s Allison said.

Almost 100 Taunton firefighters volunteered their off-duty time.

Bacon told Paula Cookson that the firefighters want to hold a special event — maybe a mixed martial arts benefit because Jadin likes it — to raise funds for the costly wheelchair.

“When you’re raising money for a good cause, people want to give,” he said.

After the Paula and Jadin Cookson left in a minivan they will need to retrofit, Bacon said, “I really think we can help this family out.”

He and Burns spoke about their high spirits during four hot days in August when about 200 uniformed firefighters on every shift set up competitions between themselves and wanted to stay out longer collecting. When one group rattled off one consecutive donation after another from passing drivers, they’d challenge the next group to beat their string.

Fire Chief William Silvia supported the drives by allowing them during work shifts with a fire apparatus and signs nearby.

“I just really think it’s great. It reflects on the department in a very positive way,” Silvia said.

Sometimes, the donations were surprisingly large.

When someone put in a $20, $50 or — a couple of times — a $100 bill, the firefighters knew to double-check. “They’d say, ‘I know what I just gave you,’” Bacon related.

“Or, 'I know where it’s going. I know what it’s for,'” Burns added.

“It wasn’t a thought in my mind that we’d be No. 1. And I don’t think we’ll be No. 1 again (over Boston),” Bacon said.